Hi,
This is very helpful. I live in Wales with my adult son with moderate learning disabilities and autism. I worry so much about the future it’s spoiling the present. I feel like no one will care for him like me and I can’t let him go.
It is great to read that your son has a full, active and happy life.

Hi,
It’s good to hear from you. Although we are agonising at the moment about how this new phase of Ben’s life is going to pan out, we realise what a lucky man he is, as so many of his compatriots are struggling just to enjoy their lives with little support.
we have spent Ben’s whole life trying to enable him to be as independent of us as possible, like his two siblings, as we believe that everyone has this fundamental right, and if it requires significant funding and support from agencies whose sole purpose is to do just that, rather than us, then we consider it to be his and our rights as citizens.
its not been easy, and has caused immense anguish to us both over the years, but Ben’s life now is a testament to what can be achieved. No adult with learning disabilities should be put in a situation where they are totally dependent on a family member in today’s Britain. and no family member should be feeling that they are the only ones with sole care and responsibility. A word of caution though: ultimately we are still fighting with and for him every step of the way and will do until we die, but we have been enabled ourselves to lead a much more normal life than if he had been living with us.
I really feel for you. You must be feeling quite wretched, thinking that all of the responsibility is on your shoulders. Where in Wales do you live? Ben lives in Pembrokeshire but one organisation that has provided him with an increased amount of freedom and feelings of self-worth is PPF; Pembrokeshire People First. This organisation, I am sure, exists in other counties too and it may be worth searching it out.
if you would like more info regarding all of the things we have gradually implemented to enable Ben to live independently, don’t hesitate to get back to us. When my husband and I read your message, we both felt profoundly sad. You shouldn’t have to feel like this!

Hi. Congrats on your new cherub! I have a 5 year old with DS. I have had to become rottweiller mum when talking to so called professionals. They all have a bit of paper with Down Syndrome at the top with a list of issues, problems. Health concerns…BUT, they don’t have a bit of paper with YOUR kid’s name on it. Tell them the language they use is offensive. Show them what your child can do. Challenge everything has become my mantra. Your child is amazing, talented, clever and all those things you would wish…and some you wouldn’t. You just have to go the scenic route to get there. Enjoy

Hi!
My name is Abi, i am a uoung adult Carer for both of my parents. I am probably one of the youngest on here with only being 16 but age is just a number to me.

In any spare time i have between college and caring i am doing music playing the piano, singing and playing the clarinet, as well as reading.

Even though i am a carer i love supporting strangers through group chat over on The Mix so i am on of there youngest listener but my experience is far from everyone elses. I bring something different to the table what my other can not bring as much what is i carer and support people 24/7 and i can not help that.

This is my life and i will never change it. Go easy on me i am very new this.

Hi My name is Marie and I live in Lincoln. I am a parent of 2 children, one of which has a diagnosis of autism.
My son who is 8 is also awaiting further investigation into whether there is any other disabilities.

Hi everyone, I’m Frances. My older brother has severe learning disabilities, epilepsy and displays challenging behaviour. He lives with our parents and goes to a day centre five days a week. I also have an older sister, who lives with her partner and son. We’re already well into 2018, but this year I hope to do a 10k run - I really enjoy running and joining an organised run keeps me motivated! Lovely to meet you all!

Hi Valentine, like you we are thinking about the future,. I am a single mum, it is just me and my daughter. I have started making enquiries about what is available with regard to supported living and have found a couple of schemes that may be possible…one is being built and one has a very long waiting list! I get how you are feeling but my daughter and I have started talking about the future. You are not alone in feeling the way you do…I have started seeing a counsellor to talk through this other stuff and that has been very helpful.

Hi everyone! I see that no one has posted on this thread for a while, and so I hope that it is ok for me to introduce myself here.

I’m Bronwen (28) and my older sister has a learning disability. Whilst she still requires a lot of support, practically and emotionally, from both my parents and myself, I’m so incredibly proud of everything that she’s achieved in her life! Admittedly though, things can be a struggle at times and so I’m really looking forward to reading some of the discussions here, and talking to other people in similar positions!

Welcome @Bron-R, I’m a sibling too! This is a great place to share your experiences and meet others in similar circumstances. Have a look at this thread Finding Siblings! - it dates way back, but there are many valuable stories and experiences shared on there that would be great for you to read as a sibling. Have a look at www.sibs.org.uk as well. Best wishes, Frances

Hi Jackie, just going through posts and found yours. I understand where you are coming from and hope that in the last couple of years you have found a suitable home for your son with the right level of support. I am still waiting to see if a new development being built in Surrey will meet my daughter’s needs. It would be good to know how you have got on.

Hello my name is Charlie and I forgot to introduce myself but have been posting.I was a nurse working in the NHS for over 50 years mostly as a district nurse.I am married and have 3 sons .My youngest is 31 and he had a difficult time at birth.My wife had a 3rd caesarian and things didnt go well although it was not immediatly apparent.He was transferred to an Intensive baby unit 70 miles away(It was at a time ,which probably hasn’t changed, when intensive baby beds were short locally)
He has Global Developmental Delay but he is now settled int o a brilliant day centre 5 days a week.We pay for this through Direct payments.We have got PIP ESA and Universal Credit, and because PIP increased his points on mobility we have a car through the motability scheme…We are concerned later that we shall not be here one day but have set up a trustwhich has a 3rd of our house included.We probabaly are now settled and able to manage better than a lot of people in same circumstances so if I can give any advice to anyone I will try if needed.Thank you for enabling me to blog!

@charlie1 welcome to the family hub! Lovely to hear from you you’re not alone in your worries for the future - many parents and siblings think about this a lot. Great to hear that you have set up a trust fund, this is a real gift to your son for the future. Keep posting Best wishes, Frances

A big thank you to everyone who has joined this topic and introduced themselves.

This topic is getting extremely long so I am closing it so that people don’t need to scroll for 5 minutes to get to the bottom!

Please don’t be put off - we’d love you to introduce yourself by starting a new topic in the Welcome to FamilyHub category. This will make it much easier for other FamilyHub members to see your post and say hi.